[MariParticipant]

Thank you everyone for your kind words and offers of support in the future. I know the time will surely come when we will need that support. Maybe I did react rather too quickly on Wednesday, it was such a shock as he has been so welland we had such highhopes for the outcome of this SCT. I know that others have been here before us and have come through. We have two consultants one locally and one at Kings. Our local consultant is never that good at explaining things. Steve spoke to his specialist nurse at Kings, and she told him many of the things that you wise people have told us here, thank you again for your calm wisdom. Maybe things are changing for the worst, maybe not just yet, but we all know the change will come and I just hope we can deal with things with dignity when it does come.
Thank you once again, you lovely lovely people, some of you so selfless as to give such support when you are already facing a worse situation that we do. I cant help but love you all,
Mari xxx

[MariParticipant]

Dear Julie,

I am so sorry that you have lost your dear mum to this awful disease. My love and sympathy goes out to you all at this time,

Love Mari xx

[MariParticipant]

Dear Ellen,

As a carer who is facing the eventual but certain loss of my partner ( with mm) and as someone who hs witnessed the grief of those who have recently lost their partners I can only say, Yes Please we need somewhere we can talk about grief and loss

Mari

[MariParticipant]

Dear David,

I am sure I remember reading something somwhere that Zometa has been shown to have an active effect in preventing relapse. I cant rememeber exactly what I am afraid. I know Eve is pretty clued up, maybe she will know. Steve mentioned this to his consultant and he, Prof Schey at Kings agreed and swapped Steve from Pamidronate to Zometa which he now has monthly. However he has to take some kind of chalk tablets daily, not sure of the name, and have his blood tested for calcium each month before his infusion. He is not allowed the zometa if his calcium levels are too low as the zometa lowers the Ca still further. I think the idea is to continue the zometa for 12 months. I hope this has helped despite all my uncertainty.
I am delighted to hear you are doing so well and the pp levels are behaving,
love Mari x

[MariParticipant]

DearMin,

I was just reading through some posts and thinking how much I missed reading your posts and hoping you would still come back. I feel totally inadequate when it comes to saying anything that might bring any kind of comfort to you. I am so sorry you are feeling so unhappy, I cannot begin to imagine your grief, but as someone with a very beloved husband with mm I can tell you it is something in our future that terrifies me. I agree with you that we all hide from the topic of death and grieving and there really is a need for some way of dealing with it here. I have seen the same need in some of Roz's posts. I also completely understand your sense of anger at the whole unfairness of Peter being taken so young and losing out on so much of his life that he should have enjoyed. I am glad that you have had the anaemia diagnosed, hopefully it is the first step towards treating it. One can feel so miserable when suffering from anaemia and that is only going to add to your grieving at the moment. I do hope you can find some comfort from spending some time with your family and, to fall back on the old platitude, I hope that time really will bring you some healing. I know you are held in such high regard and deep affection by all of us on this site, please stay with us if you feel you can, and if it can bring you any comfort,
Much love,
Mari xx

[MariParticipant]

DOH sorry Tom, I had not read your post properly, that serves me right for sneaking a peep at the website during a break at work!

M xx

[MariParticipant]

Hi Amelie,

I have heard of the M component but I dont have any idea of it's significance. My first port of call would be a call to Ellen on the infoline. I realise that may not be so easy for you as you are out of the country but maybe an email to her would do the trick and she would answer your question or point you in the right direction I am sure. I have heard that various levels can rise and fall without being too worrying. I hope for both you and John that nothing sinister in taking place, I am sure his doctors will sort things out for him,

Love Mari xx

[MariParticipant]

Dear Gill,

I have not been around so much recently and I have missed quite a few posts. It seems that Stephen has been through a difficult spell of late, I know how hard this has been for you, although I know you support him superbly. I wish you both luck as Stephen goes in for his op and i hope that he will soon be feeling better soon,

Much love

Mari xx

[MariParticipant]

Dear Bridget,

So sorry you have been have such a bad time of late with all these horrid symptoms and side effects. I am glad you found a good way through your RT and I hope your next session goes well and brings some relief. Hopefully you can get on to the next stage soon and get a bit of peace again after that,

Much love Mari xx

[MariParticipant]

More excellent news on the numbers Dai. Long may it last for you and Janet,

Love Mari xx

[MariParticipant]

Hello Ivan,

Very pleased to hear your counts are down, as the others have said any drop in PP levels is good.

If would like any more information about what paraproteins are, and some of the other indicators that are monitored, have a look at the Myeloma Uk Infosheets. I am pretty sure that you can find them under the
'What is myeloma?' tab on the home page.

Good luck with the rest of your treatment and i hope you continue to feel well,

Best wishes, Mari

[MariParticipant]

I guess you will have had your RT by now, Bridget, i hope all has gone well and you quickly get some long lasting relief from your pain,

love Mari xx

[MariParticipant]

I am delighted to hear your news Dai, its just brilliant, long may it continue,

Mari x

[MariParticipant]

Dear Roz,

I am so sorry that you are not getting the help you need from your GP and social worker. If you feel strong enough you should pester them and make sure you have not been forgotten, this does have too often I am afraid.

Have you tried phoning Ellen at Myeloma UK? She was wonderful when Steve was first diagnosed and helped me a great deal. She may be able to suggest something for you, or as someone else has said you could try the Macmillan nurses.

I cant begin to imagine the pain and grief that you, Sara and Min are going through but I hope you know that everyone on here is there for you and will give as much support as they can.

With love Mari x

[MariParticipant]

Dear Gill,

I hope you had a great time at your class, we will be expecting posts in French from you now!

Love Mari x

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